Dystonia Tardive

[heights]

I am new here.

I am contemplating DBS for tardive dystonia and wonder if there is anybody who has experienced this procedure for this condition- just to discuss pros and cons.

[Gobbsofjoy]

Tardive dystonia, Tardive diskinisia, cranial diskinisia Etc. This is my primary symptom and I've not met anyone that shares this. It involves my jaw, tongue and lips and can be a nightmare because your face is your social interface. The principle about DBS that if a symptom responds to medication it will likely respond to DBS applies here. In six months post DBS I have found a small improvement in my Tardive diskinisia. I have lowered my levadopa meds by 25% because of the DBS and that has also caused the disappearance of acting out dreams. DBS seems to have stopped my symptom progression in the area of postural stability and rigidity and I am still in the programming phase. I would definitely choose the DBS again knowing what I know now. My MDS, the surgeon, the team is central to my decision process, I cannot emphasize that enough. My experience is not unique. Studies show clearly that for the right person DBS is a good and rational choice.

[heights in reply to Gobbsofjoy]

Thanks for yr reply--very encouraging. How was the opn. any pain afterwards

[Gobbsofjoy in reply to heights]

Nothing to speak of. I had the asleep version. The battery which is a separate procedure was more uncomfortable but after one day I quit the narcotics and Tylenol worked well.

[heights in reply to Gobbsofjoy]

thanks. which hospital did you go to .

[Gobbsofjoy in reply to heights]

Swedish in Seattle.